Clinical Trials…A Difficult Decision, the Right One for My Family

In January 2013 as my parents explored the possibility of participating in an especially invasive clinical trial, my brothers and I waited. It was much earlier in the disease process then, and doing something so invasive didn’t make complete sense to me. As I grappled with denial, I wondered if the early Alzheimer’s diagnosis was even warranted. Inwardly, I certainly wasn’t ready to consider the option of an experimental procedure called deep brain stimulation. “Wasn’t she already going through enough?” I thought. “Aren’t there others that could do this?” My mom was never one to step too far out on a limb, “so why now?” The questions were incessant, but I stayed quiet. I knew that my parents would be careful in their consideration of joining a clinical trial, especially this one.

At some point, they asked for our thoughts on moving forward. The brain surgery involved placing wires in my mom’s brain and a pacemaker-like device in her chest. There was a 50% chance that after this surgery that she would be in the placebo group, and “the device placed in her brain wouldn’t even be turned on.” Everything inside me said, no, “I don’t want my mom to go through anything else”. But, I listened and heard the excitement, albeit mixed with concern in my parents’ voices. They were already frustrated by the daily struggles of my mother’s Alzheimer’s disease. Struggles that included forgetting friends’ names, feeling anxious and getting disoriented in a shopping mall and police having to take her home.

My parents were emboldened by the possibilities to make a difference that the clinical trial offered. So I agreed, “I think you should do it.” I see now that by taking part in this clinical trial and others, my mom and dad (her caregiver) have taken the power back. They have become part of the solution. They do it for my Aunt Ann, my mother’s sister who died of Alzheimer’s disease 25 years ago, and they do it for all those who will be diagnosed after my mom. They are not content to let Alzheimer’s continue to have the upper hand. They are an essential part of the movement toward a cure. It will probably not be the cure for my mom, but it may be the cure for one of us kids, or maybe her grandkids or maybe someone she will never know. The early questioning aside, the clinical trials have been the right thing, they have given my mom her power back.